1 year ago 💘 for day 280, 2020 with 583 words.


Well, it's happened. We all knew it would happen eventually, there are too many stories floating around for something like this to not happen to me. And yet. Somehow you hope that you'll be the person that this doesn't happen too.

A few months back I got my diagnosis of Fibromyalgia. Finally an explanation for the pain, the cognitive problems, the eating problems, the fatigue. Everything really. As a good citizen, I immediately contacted the Employee Insurance Agency to let them know about my 'Change in health' as I'm supposed to. A few weeks ago I was called up by the insurance doctor and had a terrible conversation with him. They call so that you can explain why you are asking for the change and how this will affect your ability to work in the future. I explained that I now had a diagnosis, that the doctor had advised me to not work AT ALL or even attempt to reintegrate at this time and informed him of how my health had been affected by my condition in the past year. The additional pain in my hands and the trouble in household chores. Additional. I explained that we now know that this is a degenerative thing and that although I'll still be exploring paths to improve my situation (my strength, my endurance, my capabilities, etcetera) the likelihood of short term improvements were limited. I explained how a year ago I expected to be able to do desk work for 10 or more hours a week by now but I knew now that I could do that for less than 6 without suffering relapses. Every time he asked me about the "medical changes" since the last talk about this, a year ago, I tried to explain these things and he didn't listen. He did explain to me how Chronic pain is "just" a disfunction of the brains pain response, that is saying that there is pain when there is no direct cause. I tried to explain that, while that is true, that is far from the only way that my condition affects me.

**Long story short; ** He has judged that I am 100% fit for work from here on out. He feels that I can easily work 8 hours a day, 40 hours a week and therefor any right I might have had to disability is now forfeited. It will take two months before my disability is be cut completely and for my income to go poof.

The poor woman who called me yesterday to inform me of this decision got an earful, but she said she was used to that. She'd asked the doctor twice if he was sure that he thought this was in my best interest since it was so different from what the information I had given them, and he said he was absolutely sure.

Obviously, I'll be filing an appeal as soon as the official verdict comes in in the mail. I cried after I hung up the phone and then I buried myself in my art for the rest of the day. Today I'm exhausted, but I'm not sure if the possible consequences of this decision have really sunk in yet. For now, I'm not panicking. There's no point to that either way. We'll just have to see how things go.

(this isn't what I wanted to write about today. But it's what I need to write about. So I'll hopefully have more interesting things to type tomorrow :))

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By Leonie Jonk 💘

Artist & Spoonie I write about my life as an artist and as a person with chronic pain, the struggles, the rewards, the inspiration & the downfalls. Oh and occasionally the odd piece of fiction :)

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